33 Inequalities in hospice care provision: a systematic literature review and narrative synthesis

Abstract

Background Hospice care is often perceived as being associated with stereotypical patients: white, middle-class, young and with cancer. Aim To review the literature concerning who is/is not referred for hospice care, with a focus on diagnosis, age, gender, marital status, ethnicity, geography and socio-economic status. Design of study Systematic literature review and narrative synthesis. Methods Searches of Medline, PsycINFO, CINAHL, Web of Science, Assia and Embase databases from January 1987 to December 2017 were conducted, with further citation, reference and hand searches. Studies of adult patients living in the UK/Australia/New Zealand and Canada and receiving a range of hospice care (inpatient, outpatient, day hospice, hospice at home, community specialist (Macmillan) nursing) were included. Case studies, opinion pieces and systematic reviews were excluded. Of 28 433 articles reviewed, 152 met the inclusion criteria. Extracted data were analysed using NVivo with a narrative synthesis of emergent themes. Results Since 1987, there has been extensive research demonstrating inequalities in hospice care provision. There is some evidence that some inequalities are reducing, particularly for those with non-malignant diseases. Nonetheless, there are still important groups with less access to hospice care, including the oldest old, ethnic minorities and those living in areas of high socioeconomic deprivation. Gender and marital status have little effect on hospice care provision. The literature concerning hospice care provision for the LGBTQ community and those living with HIV/AIDs is very limited. Conclusion Prognostic uncertainty and fragmentation of care remain barriers to receipt of hospice care for those with non-malignant disease. The oldest-old, the socio-economically deprived and those from ethnic minorities continue to receive less hospice care. There is a persisting challenge to the hospice movement to provide equitable access to all.